Technology as a Leveller

Exploring Emerging Online Health Communities

It is a commonplace that the cost of technology is collapsing and access to all kinds of devices, apps and functionality is becoming ubiquitous. What is less often appreciated is that the benefits of this accrue to citizens faster than they do to organisations. Just compare the rate at which the NHS invests in its own IT (~£1 billion per year) with what we as citizens invest in our own IT and the revolution comes into sharp focus. Assume a rather modest £400 per household to cover all those mobiles, PCs, iPads and broadband, and you find that we citizens are investing at least £10 billion per year in our own IT – ten times as much as the NHS. No wonder that your kit at home is usually better than your kit at work.

It is not just that the economics favour the citizen. The internet was designed as a distributed, non-hierarchical network so online environments embody a design preference for peer-to-peer over hierarchy. Add all this in with the ease with which citizens procure their IT (a nice trip to the Apple store) or deal with governance (just tick those pesky T&Cs) and it is clear that many benefits of digital technology accrue faster to citizens than organisations. This is why digital technology in general is a potent leveller of social and institutional hierarchies. For health services the take home message is that patients are changing faster than health care services across many fronts: information access, personal bio sensors, digital diagnostic tools, online fora, etc.

Health is – very obviously – late to this party. There are systemic reasons for this: first it is subject to multiple conflicted accountabilities which include patient, organisation, tax payer, profession, research community, educational imperatives – an ecology of local partners. Second its services are much more tightly coupled than other sectors: to work successfully the NHS needs to deliver complex, packages of care across dense ecologies of teams and partnerships – and if it gets it wrong people die.

All this means that changes flowing from the digital revolution happen faster outside healthcare than inside. As a result digital technologies act as a leveller of the traditional hierarchical distances in health care. Our research identified three consequences of this levelling for how online communities and health services interrelate:

Power is disabling

In this new world power is disabling wherever it is located or, indeed, wherever it is relocated to.

The structure of online networks (and of course the internet overall) means they resist attempts by those with power to create, lead or close down conversations. If you think your status gives you a voice, or that because you own a platform you can control it, or if you try and command an online community you will likely fail. This applies to those organisations, and the individuals within them, that currently have power: the NHS, big pharma, etc. Time after time our research uncovered stories of the NHS being risk averse to, and ignorant of, digital and resistant to the shifts in power dynamics that necessarily come with the rise of digital.

Interviewer: ‘is it still the case that clinicians don’t like it when you bring in stuff about your condition that you’ve got off the web?’ Interviewee: [incredulous laughter] ‘Of course it is. Our members frequently report that. Clinicians still really don’t like it’.

‘When the trust insisted on taking over running the patient group, it died’. Interviewee.

Patient organisations, when challenging upwards and seeking to relocate previously centrally controlled hierarchical power, are rebuffed as this represents a challenge to the power asymmetry that is currently the status quo. At the same time Patient Organisations’ position in the world is threatened by the move from “one to many” to “many to many” that online communities are ushering in to health. As a result, some Patient Organisations are unwilling or unable to see beyond fundraising and one way information provision as their main digital functions.

‘It’s common for people to break away from forums run by the national patient organisation because these often feel driven by their agenda rather than ours’. Interviewee.

In this new, upturned, world the power is with the inspired individual (mainly patients, often families of patients and sometimes clinicians) who wants to effect change. The technology is on their side. The networks are on their side. The economics are on their side. But in the wider world this leads to threat for the existing status quo which then rebuffs the inspired individual wherever possible.

‘I’ve stopped offering to lead patient education sessions in my Out Patients. They say Yes but then nothing happens. Really they just aren’t interested. Now I just go and dance their dance because they have stuff I need and it’s the quickest way to get out of the door and on with my life.’ NHS employee speaking as some with an LTC.

The NHS resembles an autoclave: on the outside technology continually increases the pressure as patients get to know more, measure more, collaborate more. On the inside the pressure rises for everyone, patients and staff, but the steel walls of the organisation still contain: Patient led platforms are recreated by the NHS and fail. Commissioning systems are incapable of engaging with individuals or small organisations. Opportunities for meaningful patient centric activity is assimilated into existing systems (for instance the friends and families test) and as such these opportunities are denied the space to develop. Like any good autoclave the result is that all foreign material is sterilised. Life goes on, albeit with more and more cognitive dissonance for everyone.

Context Collapse refers to the phenomenon, arising from social media, where the context we use to shape our communication is eroded, and eventually collapses, due to the removal of limits to size and focus of social groups, and, importantly, as the moment of now is captured (via YouTube, blogging or interacting in an online community) for the whole of the future. Michael Wesch, who came up with the term, describes the problem as “…not lack of context. It is context collapse: an infinite number of contexts collapsing upon one another into that single moment of recording”

‘What am I supposed to do about Facebook? I don’t respond to requests to Friend from patients but do I even want them seeing what I’m doing on holiday? And if not then I have to make my Facebook page private which is a drag. And that still doesn’t help me know how respond to the junior technician in my lab who invites me to Friend her?’ Cardiologist.

Context collapse removes our ability to evaluate factors which, normally, influence how we communicate and act in social settings. If we are broadcasting to the whole of the world and the whole of the future then where is the social, cultural, economic or indeed any other context that helps us shape what we say? It is a phenomenon that emerged from social media on the internet but is one that is now having an impact throughout our society, and is particularly pertinent to where online and offline worlds meet – for instance in healthcare.

But context collapse is not limited to our broadcasting onto social media and the internet, as a walk down any UK high street will attest to. How we use social media through the devices in our pockets has real world impacts on how we manage our boundaries in real life, for instance bumping into strangers on the street while we update our Facebook status or, more relevant to this project, how patients communicate with their clinicians.

Context collapse is also relevant to how we exchange and access information. The inherent autonomy that is built in to the technology of modern social networks (all nodes on the network are digitally equal) leads to a collapse of many of the mechanisms on which hierarchical traditional health care encounters are maintained:

The end of inaccessible and esoteric medical knowledge.

Personal information of clinicians being available to patients (for instance via Facebook).

Clinicians capable of accessing the personal and disease specific information of their patients.

Patients can find and interact with ‘people like me’ with the same problems and even the same clinician.

It introduces the possibility for comparison, outside of traditional regulators, so patients can compare their clinician’s performance.

It widens the channel gate by which clinicians can know their patients (via their blogs, Skype consultations, etc.).

It allows access to the medical record which is the standard against which care is measured.

Context collapse poses dilemmas for many people working in hierarchies. For online health communities that confusion tends on average to inhibit clinicians, managers and systems whilst freeing, augmenting and informing patients.

From parent-child to adult-adult

These inherent levelling effects in the technological structures of online health communities present a profound challenge to the hierarchical mind set of clinicians and managers.

In psychodynamic terms the current status quo places clinician as parent and patient as child. ‘I will look after you, care for you, make you whole again’. At times of vulnerability patients need all this: they need or have no choice but to be dependent, childlike, to have their infantile physical needs met by others. In many circumstances – on ICU, lying in A&E, receiving a major diagnosis or at times of mental vulnerability – ‘care’ modelled on parent-child relationship represents the compassion that health services need to deliver.

Historically the parent-child relation has been reinforced by the asymmetry of information where clinician is the empowered and knowledgeable parent and the patient is the powerless and ignorant child. This status quo is mutually reinforced as it reflects the unconscious needs of both parties: clinicians as saviours and patients as the saved. This dance avoids the possibility of clinicians being vulnerable and failing and patients taking agency and engaging with the reality of their mortality.

‘For the last 100 years healthcare systems have been making people with the same condition wait, often for hours, in the same room (Out Patients). Stunningly, no health system anywhere in the world has seen this as an opportunity to either educate patients or for them to support and learn from each other. Such a systemic, universal blind spot is evidence of just how strongly healthcare is inherently biased against seeing patients as competent equals’. Interviewee.

But many health conditions and care environments benefit from adult to adult relationships and, once recovered and no longer requiring a parent – child relationship, patients have always wanted to be more equal.

The advent of online communities alongside increased access to knowledge via the internet can empower patients to act as adults and redress this historic knowledge asymmetry.

‘Between themselves patients often express empathy for their clinicians (‘it must have been really hard for her to tell me that’). Historically that has almost never been expressed. Now that patients can have their own independent voice this is changing: ‘standing in front of me was a person [my surgeon] who not only felt his own pain but felt the pain of every single one of us transplant patients. (Patient Opinion story 121145). This moving story exemplifies both context collapse and a patient consciously ‘looking after’ their clinician and temporarily becoming the parent to the clinician’s inner, grieving child’. Interviewee.

More information, more bio-sensors, more collaboration between patients means that patients are proposing adult-adult relationships across an ever wider range of healthcare – a change well encapsulated by Eric Topol’s feted book “The patient will see you now”, published in 2015

However this change in power can be problematic in that whenever patients begin to act as adults so clinician boundaries are threatened. This breakdown in power hierarchy can cause transference between clinician and patient[2]. For instance when clinicians say they are concerned that patients may be vulnerable online, what they may actually mean is that they feel vulnerable when faced with these communities. When they say they are worried that patients may be bullied or taken advantage of by the unscrupulous, they are just as likely to be talking about themselves as they are their patients. For patients being dependent is at times simply an existential reality. But it is clinicians and managers who are the ones who unconsciously need that dependency. As the web gives patients the tools to forcefully assert their adult status, this is seen as a threat to the existing status quo. Transgression of the dependent psychodynamics proposed by medicine for the last 300 years inevitably leads to unconscious and defensive reactions by individuals and elements of the system alike.

[2] For more about the psychodynamics of online relationships in health services see Aaron Balick’s book The Psychodynamics of Social Networking. Connected up instantaneous culture and the self. Karnac 2014ISBN 978178480922

One thought on “Technology as a Leveller”

For £10 billion per year what do I get from my home IT systems?
I get access to various communication systems, facebook, Twitter, IM, e-mail, skype, Instagram, plus loads of other instant access on computer.
I have access to my accounts, keep on top of my investments, know my debt & credit. I can search for best deals on insurance for my car my house & anything else I need insurance for, for shopping for a tin of soup to the best Caviar (Must admit not bought Caviar, my bank balance said “No”)
I can search for anything on a variety of platforms that interests me at the time. Book a flight that suits me or a hotel at the right price.
That does not include all the apps I have from writing letters, number crunch, or design my web pages for the disinterested, or bore people to death from my vloging in video or web format!
The list goes on & on & on….

So what as a patient do I get from my NHS investment in its own IT at approximately £1 billion per year?

Very limited access from my record from my GP with too complex login. Then when I do theres not a lot I can do with it.
Yes I can make an appointment, saves trying to get thru to my GP which took 10 days just for them to answer the phone.
If I am really, really lucky I can look at the very limited info from my hospital, that is if I can remember a very complex password, scratch my back & rub my tummy at the same time.

If only I could do 1/10th of the things I could do with my computer with what I could do with my health record I would be a very happy man & probably healthier for it plus feel more empowered to take control of my health rather than sit back waiting for something to happen involving a 999 call…..